Arianna's Fight Against Late-Stage Lyme
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Athletic, outgoing, spunky, loving, and charismatic. A sister to 3, an A student, a caring daughter, and a year round soccer player. If you asked me four months ago to describe Arianna, those are the words I would have used. However, on October 12th, our world was changed and we didn’t even realize what was coming and the battles that Arianna would have to endure.
(Arianna Before October 12th)
Anyone that knows Arianna, knows that she spends most of her days wrapped up in school and soccer. With all of her passion and compassion, Arianna has always been one to stand up for the underdog and it is evident in her actions on and off the field. Never did we think for one second, that in a matter of several weeks, would Arianna be the one fighting for herself.
As a parent, we try to trust doctors and specialists, even when we feel that something is off. However, we are living proof to always, always, trust your gut as a parent. If you do not get a satisfying answer, get a second opinion and do not feel guilty about it.
Last year, the migraines began for Arianna. They were extremely painful and impaired her vision. When we took her to the eye doctor, it was reported that nothing was wrong with her vision and that she was at an age where she may experience migraines and hormonal changes. Arianna experienced migraines over the course of the year and in October, within a matter of days, her health rapidly deteriorated.
On October 12th, for the first time in my life, I was truly helpless as a mother. Arianna woke up with what seemed to be the worst possible case of Tourette’s. Her petite 12 year old body was jerking uncontrollably and her body was doing things that she could not control. It was terrifying for all of us. After taking Arianna to the ER, they said that her white blood count was low and she may be getting a UTI and we were sent home unaware of what was to come.
The next morning she woke up with both verbal and motor tics. We took her directly into the Pediatrician who referred us to a neurologist. On the 15th of October, the Neurologist could not give us any more clarity for Arianna. The doctor put Arianna on medication for her tics and blood work was ordered to check for PANS, PANDAS, and Chorea Disease. An MRI and EEG were scheduled, both of which did not occur because of Arianna’s rapid health decline which led to hospitalization.
(Arianna After Started Medication For Tics)
Watching Arianna’s health decline without being able to do anything for her other than trust in the medical professionals and pray, was an extremely difficult time. October 15th to November 7th seemed like an eternity and there were days in which we did not know if we would ever figure out what was wrong with our sweet girl and if she would ever truly recover from what was occurring. How does one explain all of this to a 12 year old girl? Regardless, Arianna remained strong. She is a fighter and she proved it more than once during these difficult times.
On November 8th, Arianna was hospitalized. It was at this time that several family and friends began to reach out and Lyme’s Disease was mentioned. Little did we know, that trying to get Arianna tested for Lyme’s Disease would be an uphill battle. The doctors did not want to perform tests for Lyme’s Disease as they did not see the need for it. We were told that Lyme’s Disease is controversial, so we continued to research on our own and press the doctors and healthcare professionals for the testing. With each passing day, Arianna’s health declined. She was not experiencing issues with her balance, joint pain, muscle spasms and she felt as if she couldn’t walk. It was baffling that the doctor’s wouldn’t consent to the testing to rule out Lyme’s Disease.
(Arianna In The Hospital)
Dissatisfied with the medical treatment, Arianna was moved from one hospital to another on the 20th of November. Here, we were told that Arianna’s symptoms were matching up with a Tic disorder and that she would be “okay”. Arianna was far from “okay”. Within 5 days, Arianna could no longer feel or move anything from her waist down. Now, the hospital said she had a neurological disorder. This disorder was one that is very rare with little information. We were told that her brain and neurological system were no longer communicating. Arianna began intense physical therapy to regain movement in her lower extremities. There were moments of time when we did not think our daughter would walk again and we were told that even if she recovered, she could have another “flare up” that she may not recover from as easily. Completely and utterly terrified.
At this point in time, I am extremely grateful for the ability to conduct research outside of what the medical professionals were suggesting. I am extremely thankful for the outreach of family and friends and their persistence in communicating their thoughts and feelings with us. These things encouraged us to continue to press for a consultation with a Lyme’s Specialist. I will forever be in debt to these individuals because they are the reason that we now have an accurate diagnosis for our daughter. We finally have answers!
Cue Snowstorm 20202, because why not! Nothing was stopping us from seeing the Lyme’s Specialist and making it to this appointment! Arianna was diagnosed with Late-Stage Lyme’s Disease with a co-infection that is a fungi infection in her gastro-intestines. This fungi infection will need to be treated first. This co-infection is causing Ari’s immune system to put all of its effort into fighting this fungi, leaving her immune system extremely weak with the Lyme’s Disease viciously attacking her body without defense against it. Even more terrifying is when the Lyme’s Doctor said that other individuals in Ari’s state would be laying in a hospital bed unable to move. Just another example of her immense ability to fight and be strong!
Arianna’s battle is not over. She will require daily treatments at a hospital that is nearly 3 hours from our home. Not only will Arianna’s treatment require us to be driving hours upon hours weekly, but insurance companies also do not have to provide Lyme’s medical coverage. Per the guidelines issued by the Infectious Diseases Society of America (IDSA), they do not have to help you with Lyme medical coverage. The insurance companies rely on IDSA to systematically deny claims associated with the treatment of Lyme’s Disease. This leaves families, like ours, that are trying to get care for Late-Stage Lyme’s, the need to pay our medical care out of pocket.
Arianna has a long road of recovery ahead of her, but we are thankful to finally have some answers and a path to finally travel to recovery. We are reaching out for support because Arianna’s treatments will require medical expenses that insurance will not cover, medicines that are not covered, hours that we will be required to take off work for her treatments, along with gas to and from medical care and bills that I am sure we are not even aware of currently. Any support through this difficult time is appreciated. We have already been so blessed by so many people and the care that we have received from people near and far has meant so much to Arianna and our family.
Thank you for your continued prayers and support through this difficult time. With all our hope, Arianna will be back to the fields doing what she loves in due time!
(Arianna Before October 12th)
Anyone that knows Arianna, knows that she spends most of her days wrapped up in school and soccer. With all of her passion and compassion, Arianna has always been one to stand up for the underdog and it is evident in her actions on and off the field. Never did we think for one second, that in a matter of several weeks, would Arianna be the one fighting for herself.
As a parent, we try to trust doctors and specialists, even when we feel that something is off. However, we are living proof to always, always, trust your gut as a parent. If you do not get a satisfying answer, get a second opinion and do not feel guilty about it.
Last year, the migraines began for Arianna. They were extremely painful and impaired her vision. When we took her to the eye doctor, it was reported that nothing was wrong with her vision and that she was at an age where she may experience migraines and hormonal changes. Arianna experienced migraines over the course of the year and in October, within a matter of days, her health rapidly deteriorated.
On October 12th, for the first time in my life, I was truly helpless as a mother. Arianna woke up with what seemed to be the worst possible case of Tourette’s. Her petite 12 year old body was jerking uncontrollably and her body was doing things that she could not control. It was terrifying for all of us. After taking Arianna to the ER, they said that her white blood count was low and she may be getting a UTI and we were sent home unaware of what was to come.
The next morning she woke up with both verbal and motor tics. We took her directly into the Pediatrician who referred us to a neurologist. On the 15th of October, the Neurologist could not give us any more clarity for Arianna. The doctor put Arianna on medication for her tics and blood work was ordered to check for PANS, PANDAS, and Chorea Disease. An MRI and EEG were scheduled, both of which did not occur because of Arianna’s rapid health decline which led to hospitalization.
(Arianna After Started Medication For Tics)
Watching Arianna’s health decline without being able to do anything for her other than trust in the medical professionals and pray, was an extremely difficult time. October 15th to November 7th seemed like an eternity and there were days in which we did not know if we would ever figure out what was wrong with our sweet girl and if she would ever truly recover from what was occurring. How does one explain all of this to a 12 year old girl? Regardless, Arianna remained strong. She is a fighter and she proved it more than once during these difficult times.
On November 8th, Arianna was hospitalized. It was at this time that several family and friends began to reach out and Lyme’s Disease was mentioned. Little did we know, that trying to get Arianna tested for Lyme’s Disease would be an uphill battle. The doctors did not want to perform tests for Lyme’s Disease as they did not see the need for it. We were told that Lyme’s Disease is controversial, so we continued to research on our own and press the doctors and healthcare professionals for the testing. With each passing day, Arianna’s health declined. She was not experiencing issues with her balance, joint pain, muscle spasms and she felt as if she couldn’t walk. It was baffling that the doctor’s wouldn’t consent to the testing to rule out Lyme’s Disease.
(Arianna In The Hospital)
Dissatisfied with the medical treatment, Arianna was moved from one hospital to another on the 20th of November. Here, we were told that Arianna’s symptoms were matching up with a Tic disorder and that she would be “okay”. Arianna was far from “okay”. Within 5 days, Arianna could no longer feel or move anything from her waist down. Now, the hospital said she had a neurological disorder. This disorder was one that is very rare with little information. We were told that her brain and neurological system were no longer communicating. Arianna began intense physical therapy to regain movement in her lower extremities. There were moments of time when we did not think our daughter would walk again and we were told that even if she recovered, she could have another “flare up” that she may not recover from as easily. Completely and utterly terrified.
At this point in time, I am extremely grateful for the ability to conduct research outside of what the medical professionals were suggesting. I am extremely thankful for the outreach of family and friends and their persistence in communicating their thoughts and feelings with us. These things encouraged us to continue to press for a consultation with a Lyme’s Specialist. I will forever be in debt to these individuals because they are the reason that we now have an accurate diagnosis for our daughter. We finally have answers!
Cue Snowstorm 20202, because why not! Nothing was stopping us from seeing the Lyme’s Specialist and making it to this appointment! Arianna was diagnosed with Late-Stage Lyme’s Disease with a co-infection that is a fungi infection in her gastro-intestines. This fungi infection will need to be treated first. This co-infection is causing Ari’s immune system to put all of its effort into fighting this fungi, leaving her immune system extremely weak with the Lyme’s Disease viciously attacking her body without defense against it. Even more terrifying is when the Lyme’s Doctor said that other individuals in Ari’s state would be laying in a hospital bed unable to move. Just another example of her immense ability to fight and be strong!
Arianna’s battle is not over. She will require daily treatments at a hospital that is nearly 3 hours from our home. Not only will Arianna’s treatment require us to be driving hours upon hours weekly, but insurance companies also do not have to provide Lyme’s medical coverage. Per the guidelines issued by the Infectious Diseases Society of America (IDSA), they do not have to help you with Lyme medical coverage. The insurance companies rely on IDSA to systematically deny claims associated with the treatment of Lyme’s Disease. This leaves families, like ours, that are trying to get care for Late-Stage Lyme’s, the need to pay our medical care out of pocket.
Arianna has a long road of recovery ahead of her, but we are thankful to finally have some answers and a path to finally travel to recovery. We are reaching out for support because Arianna’s treatments will require medical expenses that insurance will not cover, medicines that are not covered, hours that we will be required to take off work for her treatments, along with gas to and from medical care and bills that I am sure we are not even aware of currently. Any support through this difficult time is appreciated. We have already been so blessed by so many people and the care that we have received from people near and far has meant so much to Arianna and our family.
Thank you for your continued prayers and support through this difficult time. With all our hope, Arianna will be back to the fields doing what she loves in due time!
Organizer
Pepper Valle
Organizer
Lebanon, PA
